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Oh Pod! x UCL is a co-produced podcast tackling the taboos of healthcare issues. In this series, Shakira and Iman have insightful conversations with leading academics about common health related misconceptions, covering everything from anxiety to perinatal mental health. Each month Shakira and Iman are joined by a leading academic to offer their perspective on the big questions, cut through frivolous news and to de-bunk urban myths. Oh Pod! x UCL is a warm, inclusive, and inviting podcast. Episodes are aimed at the public. They are understandable to individuals from all levels of education and backgrounds, with no science experience required.
Led by Dr Rupy Kaur Matharu & Dr Shoba Poduval.
Brought to you by UCL and Waltham Forest Future Formed.
EP2_UCL.mp3
Iman Issa-Ismail [00:00:00] Hello and welcome to Oh Pod!. We are doing a three part mini series on mental health in collaboration with UCL. Today we are discussing autism and we are joined by Kurinchi Gurusamy.
Shakira Crawford [00:00:11] Thank you for being here today and joining us to talk about autism and giving you a personal and professional opinion on neurodiversity.
Prof Kurinchi Gurusamy [00:00:19] Thank you for giving me the opportunity to talk about my personal experiences. And also I'll share, some of the, aspects of autism with others. I have written, research publications in autism. So, I can provide, some expert opinion on that as well.
Iman Issa-Ismail [00:00:40] What are some assumptions/misconceptions about autism and those living with it?
Prof Kurinchi Gurusamy [00:00:45] The society has lots of assumptions and misconceptions about autism. One of the major misconceptions that the society has is that, autistic people have low intelligence quotient. Now. One of the reasons that the society might have such a perception is that developmental delays and disabilities that autistic people have in reality, most autistic people have normal like use. Another major misconception that the society has about autistic people is that autistic people lack empathy. I think this is because of the difficulties in communication that people with autism have. For example, I can understand people's joys and sorrows if they are communicated to me in a way that I can understand. But many times it's not done in a way that I can understand.
Shakira Crawford [00:01:49] Yeah, I know, like, autism, autistic people don't understand sarcasm, but I'm interested in, like, how somebody can speak to you in a way that you can understand, like how they can explain their emotions to you in a way that you can understand.
Prof Kurinchi Gurusamy [00:02:06] Just tell me how you feel. If you feel happy about my answer. Just tell me. I'm happy with your answer. Or, if you feel upset with my answer, please tell me that, you're upset with my answer. And subtle things just pass just over my head.
Shakira Crawford [00:02:28] You mean, like reading body language and passive aggressiveness? You don't get.
Prof Kurinchi Gurusamy [00:02:31] But absolutely not. That's all. That's all. You have to spell it out for me. I'm getting slightly better, at, some of the sarcastic ways that people say. And I can speak with irony, but, I don't understand other people, when they speak in a sarcastic way. And if I did understand, that somebody was sarcastic about my behaviour, they are in for it. That's what I continue.
Shakira Crawford [00:03:01] I'm the same.
Iman Issa-Ismail [00:03:02] So do you prefer it when people are more direct with you?
Prof Kurinchi Gurusamy [00:03:05] Absolutely. I would simply, prefer if somebody said I am happy or I'm unhappy with what you did, then, I can I then have my options as to whether I should change my behaviour or, whether. They felt unhappy in an unfair way against me, and make that decision. So.
Shakira Crawford [00:03:31] What was your process for being diagnosed with autism?
Prof Kurinchi Gurusamy [00:03:35] I've always had difficulties in social communication, both as a child and as an adult. In 2008, I developed depression and. I had been reading articles about autism in the BBC news website, and they talk about these difficulties and, I felt that I could be autistic. And, one of my classmates, he was a classmate at college. He's now a consultant in psychiatry in Australia. He suggested whether, my difficulties could be explained by autism. And it was at that time I really felt that I had autism, and it was a big burden off my shoulder when, my friend suggested that, that is because it could explain the differences in the behaviour I have from others. And also the way I think. And from then on I could make adjustments to allow me to live a more peaceful life.
Shakira Crawford [00:04:56] It gave you answers.
Prof Kurinchi Gurusamy [00:04:58] It gave me answers. That I was searching for. For example, why am I different from others? Why do I behave differently even though I don't feel like harming others? Even though I am doing something good for this society or for others, why do people misunderstand my behaviour? The diagnosis of autism gave me that. Answer.
Shakira Crawford [00:05:26] No. Yeah, I'd imagine you you felt seen and understood.
Prof Kurinchi Gurusamy [00:05:31] Yes. Yeah.
Iman Issa-Ismail [00:05:34] People who are diagnosed with autism as a higher risk of developing mental health disorders, such as anxiety and depression.
Prof Kurinchi Gurusamy [00:05:41] Yes. People with autism are at higher risk of developing mental health issues. In a recent study conducted by National Autistic Society, and mind and the survey was published in 2020, it found that more than 90% of people, with autism had anxiety and more than 80% of people had depression. More than 30% of people had major depression. Another report by autistic, indicates that. Autistic adults without intellectual disabilities had nine times higher suicidal risk than neurotypical people. They also report autistic children, or 28 times at higher risk of thinking about or attempting suicide than neurotypical children.
Iman Issa-Ismail [00:06:41] So why is it that you think that there is such a higher risk of such mental health issues?
Prof Kurinchi Gurusamy [00:06:48] The reason why I think, that is higher risk of, anxiety and, depression, is because, we are different from neurotypical people. And because of this difference, even in school, that is a lot more bullying of autistic children, than, neurotypical children, simply because they behave differently from others. And this continues because most of the communications are misunderstood by other people. And. We have difficulty in understanding other people's communication as well. All of this contribute to, mental health issues.
Shakira Crawford [00:07:36] In what ways do you think educational facilities and workplaces can better support young individuals with autism?
Prof Kurinchi Gurusamy [00:07:44] It is said that patience is a virtue, and this is very true in the case of autistic people. This is because autistic people are very direct in the way that they talk. And this can be misinterpreted by others as rudeness and arrogance. Autistic people have lots of hyper sensitivities. As an example, I am hyper sensitive to light and sound. And if you ask me to work in an open plan office, I would struggle. On the other hand, if you ask me to work in a suitable environment, I would be very productive. Same way, teachers should be aware of this hypersensitivity so they can remove the autistic child from the offending stimulus. There are lots of other difficulties that autistic people can face, and this can differ from one individual to another. As an example, I have difficulty with remembering names or faces. Once people understand the difficulties I face, most people are willing to make that reasonable adjustment so that I can carry on with my daily life. And it is that understanding that some people lack and that makes it difficult for us.
Shakira Crawford [00:09:16] I have heard that there are some autistic people who really excel in certain things, like a lot more like a superpower compared to, I would say, the.
Iman Issa-Ismail [00:09:25] Same thing, superpower that they have.
Shakira Crawford [00:09:28] Yeah.
Prof Kurinchi Gurusamy [00:09:30] Repetitive behaviours are considered as a part of the diagnosis of autism spectrum disorder, but it is the same repetitive behaviours that has brought me to this position, because it allows me to focus on these narrow interests that I have, and achieve what I have done. Another thing that I think I am able to do well is, to be able to dissociate myself from decisions and emotions so I am able to make appropriate decisions even when I am in a less than ideal emotional status. I was like when I was when I was in, as a child, I could read, text once or twice and I could literally recite the whole text. Or when I write, I would even remember, come on. And if you ask me to write the page number of the textbook, I probably could. So, so I had that sort of my memory. These days, I don't quite have that. That sort of a memory. But I still am able to remember most of the things. I may not be able to tell the exact phrase, but the general context and general idea I would have that, still. And I am able to, remember, things that I read, which I don't understand. I still can remember that. And when I read something else related to it, then I can put. The first thing into context. That means that the time I spend on learning new things is much less than what somebody without that ability can do. So I would say, understanding something in a very quick way, is one of the powers I have.
Shakira Crawford [00:11:43] That's a good superpower.
Iman Issa-Ismail [00:11:44] Yeah, a lot of people struggle with making decisions with a level head. Yeah, that's a really great tool to have.
Prof Kurinchi Gurusamy [00:11:51] Thank you.
Iman Issa-Ismail [00:11:52] How do you think society can improve in terms of accepting and accommodating individuals of all ages with autism?
Prof Kurinchi Gurusamy [00:12:01] If people can accept that. That would be people who behave. Differently from others without meaning any harm to the society. Then that's a big step forward. That acceptance, would not only help people with autism, but it will also help with, help people with other disabilities. The best thing that people could do is speak to autistic people, find out what difficulties they face, and make some reasonable adjustments to address those difficulties. Usually this doesn't cost a fortune. It is just a change in the way people approach things. That way the society can help, autistic people just accept this as different from others.
Iman Issa-Ismail [00:12:55] So you say communication is probably the best way to make this change is just to communicate with people on what they need.
Prof Kurinchi Gurusamy [00:13:03] Yes. Yes. And that ended up directly without being subtle.
Iman Issa-Ismail [00:13:07] Okay. I think that's.
Shakira Crawford [00:13:09] Yeah. I think it's always important to approach people in a respectful way. So if you know somebody is autistic, it wouldn't harm you to look up on autism and kind of learn how to approach autistic people.
Prof Kurinchi Gurusamy [00:13:24] Absolutely. And, to a large extent, we understand others. If they explain things as to why they are doing certain things. These things may be implied for normal neurotypical people, or neurotypical people may actually, already know why somebody is doing something else. But, many times the autistic people may not know why somebody is doing a certain thing or saying a certain thing. And it is just that extra bit of, information, not communication, that's needed. And, we are not villains.
Shakira Crawford [00:14:05] No.
Prof Kurinchi Gurusamy [00:14:05] Yeah.
Iman Issa-Ismail [00:14:07] I have a question, but it's, like, completely nothing to do with any of those. But it was a question. Is. So like you, obviously with people, there's, you might find it harder to read emotion stuff, but when you're watching, like, movies and reading books, is it easier or is it harder because you can't communicate with something that's already filmed or something? You just have to process it? Do you process it? Do you think differently or the same?
Prof Kurinchi Gurusamy [00:14:34] I feel it is much easier to understand, in movies, because in movies they exaggerate things. So they exaggerate emotions. So, to a large extent, I do understand, emotions in movies. I still have it, difficult when, when there is a new act, because, of my difficulty with, remembering names on faces and I have to, look at ways of identifying them so I can understand the movie. But other than that, it's much easier, to follow, movies than, real life, because actions are exaggerated.
Shakira Crawford [00:15:17] Then would you say you would you say you do well with dramatic personalities, then, like people who are really drama queens and exaggerate their feelings in life?
Prof Kurinchi Gurusamy [00:15:27] If they exaggerate the real feelings? Oh, yeah. Okay. Yes. Because, sometimes, people exaggerate a feeling, that is different from the real feeling. So if people are exaggerating their feelings, then absolutely. It makes life a lot more easier for me.
Shakira Crawford [00:15:47] Yeah, I know quite a lot of autistic people, and, I don't know, it seems like there's some there's definitely something different about them, but in a good way. When I approach and when I come into contact with an autistic person and I find out they're autistic, I it just makes sense, like there's a part of them that see things differently to other people. Are there any abilities with autism that you find unique or that stand out?
Prof Kurinchi Gurusamy [00:16:13] A proportion of people have intellectual disabilities. Proportion of autistic people have intellectual disabilities. Well, the majority of the, autistic people do not have intellectual disabilities. And generally, autistic people are, non-judgmental. Of course, I cannot speak for every autistic person, but, it's a feature of autistic people. And that means that people, are generally kinder, even if we can't, show that in our phase or, and we may not tell things in the most appropriate time, because we don't understand how we feel. We still, respect others. This is. Misconstrued by others because, unless you tell me how you feel. I wouldn't be able to tell you the right thing. Whereas you are expecting me to understand your emotions and tell the right thing, so. So that is a problem. Because we are direct, we may be considered rude and arrogant. So these features. Dominate if you want in some people's mind, while others accept us as we are. And. For example, there are people who, specifically come to me, with advice, on, a research project. And they know that I be critical about the research project. And I tell them, the answer that they gave is, well, that's why we are coming to you. You don't sugarcoat things, and, you tell things as you feel, and I am able to address that. And I'm getting grants because of this. So, this is why I am coming to you. So there are people who appreciate it. There are others, who feel offended by how we say things.
Shakira Crawford [00:18:21] Yeah. A good ability that autistic people have is that they do have great attention to detail, and I think they are great people to go to for advice, no matter what the advice is. They definitely are.
Prof Kurinchi Gurusamy [00:18:32] Yeah. Certainly I would be able to, give a systematic, advice, completely dissociating, from any emotions, that that would be true for me, but I could also do it for others. So. So there are people who come to me, about, difficulties they face. And then I give them some advice. And, I am pleased to say that some people at least, feeling better after speaking to me.
Iman Issa-Ismail [00:19:03] How could someone possibly know that they have autism? And are there any common behaviours associated with autism?
Prof Kurinchi Gurusamy [00:19:12] Autism spectrum disorder, is diagnosed when people have persistent difficulties in social communications and interactions in different contexts, and when people have, narrow and restrictive patterns of behaviour and interests. There is no single diagnostic test where you would be able to tell for definite that somebody has autism. For example, the Autism Diagnostic Observation Schedule version two is commonly used to diagnose autism in children. It can miss 10% of people with autism. And it can over diagnose autism in 15 to 20%. The key is to be aware of these symptoms so you can consider the diagnosis of autism. When people have these symptoms. But this is also complicated by autistic people trying to mask their symptoms, and this is called camouflaging.
Shakira Crawford [00:20:28] I have heard that it is much harder to diagnose girls than it is boys, because girls are good at masking and copying and following the lead, and boys just seem to just be more free and open with their personality. But girls tend to copy and mimic more.
Prof Kurinchi Gurusamy [00:20:44] Yes. That is one of the theories, that people, have put forward, for autism diagnosis, being, commoner in, boys than girls. For example, autism diagnosis is typically made around five years of age. And, it's four times commoner in boys than girls. There are various theories as to why, this is, the case where, more boys have autism than girls. And one of the theories being put forward is the ability of, girls to, mimic other people's behaviour. But this introduces, a lot of strain in these people, and can lead to poor mental health.
Iman Issa-Ismail [00:21:39] Do you receive a positive or negative reaction from people when disclosing that you are autistic?
Prof Kurinchi Gurusamy [00:21:44] I had not disclosed that I was autistic until I had made significant progress in my academic career and done all these achievements, and once I had made all of these achievements. Now I am very open that, I am autistic and, I get a lot of support from my work colleagues when I say I have autism. But I don't think the society is yet ready for autistic people. As an example, society expects, people to be in long term relationship, society, expects people to participate in parties, to indicate that they are, friendly. I am very friendly with people, but I don't want to go to parties.
Iman Issa-Ismail [00:22:38] Me too.
Shakira Crawford [00:22:40] Everything you just mentioned seems completely normal. Yeah, well, to me.
Iman Issa-Ismail [00:22:43] I was going to say a lot of people think now the society, maybe most. It's a different generation. But the younger generation, a lot of people are introverts who don't want to go outside, who like staying at home.
Shakira Crawford [00:22:52] Who can't have like, a relationship.
Iman Issa-Ismail [00:22:54] And I think with Covid as well, there's a lot of been people who struggled with being social in general. I think it has kind of changed people's perspective on having those social skills are not as common anymore, I feel like. So I think it maybe hasn't reached you yet, but it is slowly progressing. I think in terms of people accepting that side of stuff.
Prof Kurinchi Gurusamy [00:23:15] You just mentioned about Covid and, that there are, there are people who are asking me, how I cope with, Covid, because, studies have shown that, autistic people, affected more than neurotypical people during the Covid. And one of my work colleagues said, how are you coping? I said, I have been preparing for this for my entire life, not going to other people's places. Yes.
Iman Issa-Ismail [00:23:46] You loved it.
Shakira Crawford [00:23:47] It was great, you know, not the dramatic. No, no, not.
Iman Issa-Ismail [00:23:52] But. Yeah.
Shakira Crawford [00:23:54] Thank you, thank you. That's great. Yeah. What support is available for children and adults who have diagnosed autism? And for those who have undiagnosed autism.
Prof Kurinchi Gurusamy [00:24:04] I am aware of autism groups. And. Neurodiverse, with networks and universities that provide support to people with autism. I am not aware of any special support to autistic people from the government. For example, I would have expected, the government, to give, special support to develop communication skills for autistic people. Or run campaigns, that would, essentially make autistic people acceptable to the society. I have not heard of those things. Currently. The. Parents have to. Wait for a long time to get a diagnosis of autism in their children. I think if autistic children, have, intellectual disabilities, they may get some support from the government. But if they do not have intellectual disabilities, and their language, is, possible. I don't think they are getting any special support from the government.
Shakira Crawford [00:25:24] The only support I'm aware of is speech and language for AP and maybe ADHD plan just monitoring steps and children throughout the year. But yeah, they really don't get the help they need, which is really sad.
Prof Kurinchi Gurusamy [00:25:37] But it caters to some people with autism, but not to other people with autism. I can speak and write literally. But it's this semantic language that I have difficulty in processing. So so I wouldn't qualify for language and speech therapy for example.
Shakira Crawford [00:25:58] Is a vast spectrum as well. There are some people who from your first like introduction with them, you can see they're autistic. And then there's some who you find out later are autistic. And you're just so surprised, which I've had both cases. So it really is an interesting thing.
Prof Kurinchi Gurusamy [00:26:15] This comes back to camouflaging.
Shakira Crawford [00:26:18] Right?
Prof Kurinchi Gurusamy [00:26:20] It puts a lot of strain on, autistic people. I'm now open about being autistic, and I am free to talk in the way that, I like to talk. That is because I have reached, a position. I feel, society will respect me, regardless of whether I am autistic or not. But for someone who has not achieved that status, I think it puts a lot of pressure on them and could be a reason for poor mental health. And people, certainly people who are not able to make that adjustment, will probably be at very high risk of, poor mental health.
Iman Issa-Ismail [00:27:04] Someone who's autistic, who doesn't know that autistic. Is there anything that would you give any advice, be like, trust or instinct? If you know that you have something or what advice would you give to someone who doesn't have like support to be like, maybe you should get tested, but they feel like they might be like, what would advice would you give them? Like just say go with your gut, like or research more on it. What would wise would you give?
Prof Kurinchi Gurusamy [00:27:29] You have to be careful what you're wishing for. For example, in my family, the force, is strong. I have, every single generation in my family that is at least one autistic person. There are some people who, that, undiagnosed, and there are some people who don't want to be diagnosed as autistic. So the first thing you have to remember is what are the implications for you? Do you really want a diagnosis of autism? And if you, if you say, okay, I'm happy to live with that, diagnosis, then, I would say, get tested. At present, I don't think there is a lot of, support around that, simply because, the symptoms, or maybe, particularly, at that age of diagnosis, when you would expect children, to have some social anxieties in the beginning. And, the GP might rightly say, well, that's part of development. And, so, so it's important not to get frustrated at those times, and see how, these developments happen and, revisit the question, after some time, at the end of the day, it might be that, for example, I didn't even know that I could have a diagnosis of autism. And certainly one member of my family doesn't want to be diagnosed as, autistic. So it's, it's something that you have to think carefully of, about what the societal, repercussions are, and, workplace repercussions are and. That's an individual decision whether to get tested and be diagnosed as autistic or not.
Shakira Crawford [00:29:49] Yeah, I think it's really important to be diagnosed so you can get the support that you need. But then there are people who can function and go by their day to day life and have autism, and they don't want a diagnosis, which is fine. But for other people who are really falling behind and really need support. You need a diagnosis to get any of that support.
Prof Kurinchi Gurusamy [00:30:08] Yes, absolutely. In autism, that is high functioning autism. There are others who have intellectual disabilities. And, when people have intellectual disabilities, it's important to have a diagnosis so they get the right support. But people with high functioning autism, may, may consider things in different perspectives.
Shakira Crawford [00:30:33] I was wondering if autism was higher in adults or children.
Prof Kurinchi Gurusamy [00:30:39] Autism, diagnosis is made typically, with an average age of, five years. There are lots of adults who go undiagnosed as, autistic people because, they are high functioning. So, as an example, the one possible reason why I was never diagnosed as, autism when I was a child is because I was the closest in terms of behaviour to my grandmother, who was, extremely successful doctor. So, I got away with a lot of things, that many people with autism would not get away with, just because I resembled her. And, in my behaviour, people sort of accepted that I was the closest to her in my family, in terms of behaviour. And I accepted my behaviour.
Shakira Crawford [00:31:39] Yeah. So you said that you didn't disclose that you're autistic in your professional career until you reached a certain point, and then you felt like you was safe to do so. So what advice would you give to people who are autistic or even undiagnosed? Just have a feeling that they're autistic and they're going into the workplace, and they're not sure if they should disclosed this in fear of being treated differently or missing out on opportunities.
Prof Kurinchi Gurusamy [00:32:03] I think disclosing that you have autism. Can be a problem in the workplace and in the society. You have to weigh the pros and cons yourself. The situation might be different in different scenarios. I was comfortable disclosing this one after I reached a certain position, because I felt it was safe to do so. I didn't feel safe to disclose this earlier than that because of the negative perceptions about autism. So it is a decision that each individual has to make for themselves as to whether they are ready to disclose that they have autism.
Shakira Crawford [00:32:49] And also depends on the line of work that you do as well. I know there's some workplaces that are more accepting. There are some workplaces that are very inviting towards people, like, I work with a lot of autistic people, and we're very encouraging and helpful towards them and considerate. So it also depends the environment you're in as well.
Prof Kurinchi Gurusamy [00:33:08] Absolutely. This is a decision that you can only, make, considering all of the, the entire situation with you, whether, for example, I still had a doubt whether neurotypical people would accept me as a leader despite all my achievements. And, my work colleagues encouraged me to apply for leadership positions. And, I'm head of research in the division of surgery, at UCL. So.
Shakira Crawford [00:33:39] And amazing things. Thank you.
Iman Issa-Ismail [00:33:41] That, that was all for today. Thank you for watching. I hope you learned something the way that we did. I've been your host, man.
Shakira Crawford [00:33:49] Shakira.
Iman Issa-Ismail [00:33:50] Thank you to our special guest, Corinne G. I hope you enjoyed today's episode. Sure.
Shakira Crawford [00:33:55] Thank you so much for joining us.
Iman Issa-Ismail [00:33:57] And we have been hard.